Sunday, August 31, 2008

Made it to shore.


CRASH LANDED (read this first)






I got tired of treading water.
I got tired of hoping I could swim back to where I started.
I got tired of hurting when I saw those on their way to Italy arrive safely.
I got tired of holding my breath under the dark water of grief.
I got tired of swimming the wrong way.


I got tired of hating Holland.



I made it to shore.
I feel at home now.
It feels so safe here.
I LOVE my countryman.
What a blessing to be here.
Certain joys only meant for our shores.

We have to work to survive it here,
nothing is easy.
But our complaints are few,
Our lives more complete.
What an honor to live here.
What so many dont get.


I got tired of swimming,
I know what my life was meant for,
I got tired of treading,
I made it to shore.

by Jessica Pruitt






Saturday, August 30, 2008

Alex's things



Following the lead of Abby's mom, I am blogging about the things in Alex's life that we use that make our lives a little different.

Here are his daily meds.


Simply thick goes in his juice cup that he uses to practice his swallows.



We got this before we came home from the NICU so I could feel like I was still right next to him, and not spoil him at the same time.




reflux harness.





When we dont use the pump, and we need to feed him while he is sleeping this is how we bolus him. Usually he gets his water this way at nap time.






Feeding bags for the pump.







The pump.








The suction machine, it looks scary, but I know it kept us out of the hospital last year, and now we own it, so I can always help Alex out when he is stuffy. ( I highly recommend this for babies who aspirate)







Neb machine for breathing treatments.












P's and Q's chewy for meal time.









Exercise ball, this helped Alex so much with tummy time in the beginning, now we use it for sitting. I sit him on it and lean it side to side, to strengthen those muscles.



Just a peek at the things in our daily lives that make us special.
















Wednesday, August 27, 2008

A year ago.


I was nesting.
Cleaning out closets, dusting, vacuuming, scrubbing floors, washing crib bedding, laying out the little newborn diapers, cleaning bottles, reading "bringing baby home" books to the boys, making sure there were enough dinners in the freezer for me to prepare when we brought Alex home. I was getting ready to bring Alex home.


A year ago, I was hopeful, I was hopeful what the doctors were telling me was true, Alex was fine, everything is fine. Deep down I knew better, but I held onto hope. I chose to ignore what I was feeling, what I knew, and I held onto hope that we would have a safe delivery and be bringing home a healthy baby boy two days after he was born.


A year ago I was nesting, and I had hope.


On the move.

I need to get those outlet protectors for little fingers. I do believe that a year ago I had all the outlets covered up, but after a year of vacuuming and not worrying about Alex touching them, they have been pulled out, and misplaced. He is now rolling around the room! I now have to worry about things like outlets, and marbles, and legos! I'm so excited!


Tuesday, August 26, 2008

A small step forward

He doesn't love it, but the fact that he is bringing it to his mouth, and tolerating it is great. Alex doesn't love to eat, and part of our problem is he isn't ever hungry since milk is almost always in his tummy. I think he has a slight aversion to people putting things in his mouth. Also I don't think he associates his mouth with food anymore since we took the bottle away. A small step forward, but at least its a step!
I have to add to this post....This morning Alex did awesome with his "cookie", and drinking his juice. He really seemed to want them, and did well swallowing his juice. I have big dreams for the next year and seeing how far we come in the next year with eating. For us the hardest part of all this is feedings. Everything revolves around his feeds, his reflux, his intake needs, his hydration.


Sunday, August 24, 2008

Too Big!

I am sure that Alex is way past the weight limit for his swing, but he LOVES it. I caught him grabbing his mobile, and sitting all the way up. He is spilling out, I just hate to take it away from him.




















Friday, August 22, 2008

25 things about me.........

First Anna Kate's mom did this, and I thought all I do is tube feed, and therapy, how can I think of 25 things about myself, then Will's mom did it, so peer pressure has won, and I will share 25 things about myself.......
1.I was born in Ft.Collins Colorado, and lived there for two years before we moved to Illinois.
2.I was in a pretty bad car accident when I was 16, was not wearing a seat belt, crawled out of the ditch then laid on the side of the road until some strange man picked me up, and took me to the police station. That could have ended badly!
3.I got a tattoo on my foot for my 18th birthday, my dad took me to get it, he was worried about hepatitis. Thanks dad! Blood work still clean:)
4.I got an associates degree in radio broadcasting, I'm not sure why, later I got my Bachelor in social work, the two really don't go together.
5.I put a dead squirrel on my friends windshield as a joke, we were weird like that. Hi Steve!
6. My favorite place on earth is the beach. I went to Cancun with a friend after high school, that was fun.
7.I got called on in church by the pastor for talking, shhhhh.
8.I was third in my class!!!! Out of three.....(sigh).... small private school:( ARRRG!!!! That is all I will say:(
9.Every winter for most of my childhood, my dad took me and my brother skiing in Steamboat Colorado.
10.My grandma took me, and 9 of my cousins on a cruise in the Caribbean.
11.I secretly like to sing, but get sick when I have to do it in front of anyone.
12.I dont mind the smell of skunk. Did I just type that???? You know you like it, you were just taught not to like it. Sorry, but I'm running out of stuff. Its true though, only fresh, if its been there a few days it starts to get pungent.
13. If you are still reading, I love Seinfeld and The Office....I now hate live tv, love the DVR!
14.I find Carry Grant attractive.
15.I like to play volleyball, and I love to win, and I get very competitive. Second place means you are the first loser. My volleyball coach used to say that.
16.I am sooo afraid of heights, I hate to fly, I grabbed the strangers leg next to me once when we had some turbulence, sometimes I even get dizzy watching tv if someone is up really high..
17.I was a waitress at Lonestar Steak House while in college.
18.I love cake. Just saying it...C A K E mmmmmm!
19.I love to laugh, especially when you are trying to be quiet.
20.I hate insects, especially spiders, I believe they are out to get me, and I will not tollerate them (once I made Joel kill a cricket, and Noah pick it up because I couldn't).
21.Adam and I met in college at the college radio station he was my second year student teaching me the ropes. College Radio's Best 89.9 WLCA!
22. I cant make myself burp, I don't get the whole swallowing air thing, it makes no sense.
23.I love to sleep in my king sized bed, I will never sleep in a smaller bed, NEVER. I love tylenol pm.
24.I lived on a farm for 16 years.
25.I bite my nails, Ive tried to stop. Its dirty, and looks ugly. I cant stop.

There you go, now you know too much.

Tucker sling

I had a few people ask me what the reflux harness was that Alex sleeps in. Here is the link.
http://www.tuckersling.com/
He used this in the NICU, and we brought it home. We are hoping soon to lower his crib, and see how he tolerates his night feeding without being elevated. He was pretty high since we had the harness to keep him in place. So far we have removed two blocks, we have two more to go before he is flat.
I really recommend this harness for any baby or child that has severe reflux, it was a life saver for us. Once the child starts to become very active though, you eventually have to let them be free.

Good morning

When Alex wakes up in the morning he likes to tap his fingers on the bed and listen to the sound.
After I unhooked him from his reflux harness, about to roll over.

Good morning mommy.

It has been 6 days, and NO throw up, I haven't been able to say that since May. SO the smaller bolus feeds are the answer, I will hang onto the Reglan, but as of now Alex doesn't need it. Also he has been getting formula during the day (Alimentum), and is pooping just like always, the true test will be when formula replaces breast milk for the night feed, but that wont be for a few more weeks.
Things are good right now.

Wednesday, August 20, 2008

One heavy load!

I took Alex outside with me to water the flowers, and before I could water everything my arm was burning from his weight. He is 27 pounds, and I don't lift weights. So we put him in our "Baby Trend" carrier, that also is a seat, and I wore him on my back and finished watering the flowers. He loved it, and it was sweet to feel his fingers in my hair. He is way to heavy for me to take on walks this way, but I think when we go to parks he can at least sit in it, and I can carry him for about 15 minutes at a time.









First Grade is going to be great!




Monday, August 18, 2008

Does summer really have to end????
















Last night we celebrated the end of summer in our backyard. We lit up the rest of the sparklers that didn't get used on the 4th of July.
School starts on Wednesday for Noah, the 1st grade!!!!! Joel still has until after labor day before he starts preschool. Tomorrow is the official day of babysitting for me too, the teachers go to school tomorrow, but the kids stay home, both parents of these kids are teachers so we get to play with them all day today and tomorrow. Before I got pregnant with Alex I started to baby sit for a wonderful family who has since become our friends. They have three wonderful kids 8, 6, and almost 2. After Alex was born we all had to make other arrangements, but this year I will be watching the two older kids after school, they all go to the same school so its an easy pick up. The little one will be with another sitter because with all of Alex's therapy, and doctor visits I wouldn't be able to give the attention to both little ones. We will miss the extra little one, but I hear there are other 2 year olds at the new sitter so it will be more fun I'm sure.
I am a little excited for the schedule of the school year, but I could use another two months of summer.

Sunday, August 17, 2008

So far so good!


Yesterday we started the smaller bolus feeds, and as of now we have had no throw up. Its only a day and a half into it, so I'm not comfortable saying we found the solution, but so far so good. I even laid him on the floor to play after a feeding which is unheard of, usually he goes to his jumperoo to digest a bit before he can be active. Maybe I wont have to use the Reglan after all. Cheri and I decided to give it a week, and if he does great all week, then I will just hang onto the prescription of Reglan, and hope he continues to do well. Like I said so far so good!
Thank you all for your comments, you have been a wealth of information. It means so much that you care enough to help out.

Friday, August 15, 2008

Reglan

Our GI appointment went ok, its all very confusing. He wants to cut Alex's feeds, basically eliminating an entire feed, which is good for me in that I wont be feeding him as long, and good for Alex, smaller feeds means less reflux. However he was barely meeting his nutritional requirements as it was, so now take our a entire feed, and we are short on protein which makes us grow, and vitamins that makes us strong. I'm not sure what to do.
He also gave me a prescription to Reglan, this should help with the vomiting, but it has some nervous system side effects, and I don't really want to mess with his nervous system. Id rather have a happy baby who throws up once a day than a grumpy nervous baby who doesn't. Does anyone else have any experience with Reglan? The doctor put him on a very low dose.

GI appointment

This morning we are headed back to St.Louis, yes we were just there on Tuesday. Alex has a follow up GI appointment. They will check out his mic-key button, and we will discuss feedings. I will soon run out of frozen breast milk. I only make enough for the night feeding 550cc's, so I haven't been able to freeze any since we got the feeding pump. When I run out he will get formula during the day, and fresh breast milk at night. Then at a year old he will get all formula. We are going to try Alimentum since it is pre digested (sounds yummy)! My biggest fear is constipation, so far Alex has never been constipated in his life, he poops every day, and always has. This is either just who he is, or is because of the breast milk, or that he is well hydrated. I'm hoping its just who he is. Most RTS sweeties are constipated, so it has been a miracle of sorts that Alex poops every day, I pray it continues when his mommies milk is all gone.


Thursday, August 14, 2008

Bump...Re post (movie boycott)

Retarded
The word no one likes, the word no mother or father wants to hear when a doctor is talking about their child.

The word most people use when talking about something they dislike, or when referring to someone they see as less of a person.

The word children are allowed to use in their daily vocabulary when talking about someone or even something they don't like.

No one likes this word, no one wants to be called retarded.

People hate the word retarded.

Here is the definition of the word."Mental retardation is a generalized, or triarchic, disorder, characterized by subaverage cognitive functioning and deficits in two or more adaptive behaviors with onset before the age of 18. Once focused almost entirely on cognition, the definition now includes both a component relating to mental functioning and one relating to the individual's functional skills in their environment."

So many people use the word retarded as slang.

To some of us it is personal, to some of us it is our children, our precious babies whom we love as much as any mother loves her precious child.For some of us retarded is a word that involves our every day lives.

There isn't a joke involved, and there is no hate.For some of us retarded brings us more love that we wouldn't have had the privilege of knowing otherwise.

This horrifying word to most people has made some of us stronger, better, and given us deeper lives.

We all remember the first time the doctor used that word when talking about our child, maybe it was straight from their mouth, or in a medical report.

We remember the day, the moment, but that child is the same child we fell in love with in our womb.

The word retarded hasn't changed our love, in fact its made it bigger, and made us better.Next time you want to use or hear someone use the word retarded in a derogatory way, remember those of us who have been forever changed, and be changed too.

Remember those perfectly different people who see the world through the eyes of precious innocence.

Thanks, being changed daily......Jessica Pruitt
Posted by Jessica mommy to Alex/ RTS at 10:42 AM


I'm asking you to think twice about watching a movie like Tropical Thunder. I'm asking you to not support a Hollywood that makes a joke out of my Alex, don't see a movie that makes Alex look like less of a human being because he has special needs. Alex has special needs, he has disabilities, he has a way of making everyone around him see the world like it could be, like it should be. His life is worth so much more than one night out at a movie that says he is only worth a cheap laugh.

Petition

National Post Editorial Board

http://www.nationalpost.com/opinion/story.html?id=721501

http://www.nationalpost.com/opinion/story.html?id=721501


The last two were written by parents of RTS children.



Birthday pics

Ice cream for breakfast!
Then opening gifts!

Playing in the water!






Lazer tag!










Birthday Cake!














I actually took these today, the boys all have on their Phillips family reunion shirts on (Adam's Mom's maiden name)








Wednesday, August 13, 2008

Happy birthday Noah! 7 years!!!













how fast these 7 years have gone! You are so caring, an awesome big brother, a great builder, you love to learn, you love numbers, and letters, and drawing stories, you are a great swimmer, baseball star, goal scoring, basketball shooting, silly joker, awesome little boy! Or big boy I should say.
We love you so much Noah, and cant wait to see what the next 7 years will bring. Continue to amaze us!